Towards the end of December 2012 I noticed an open sore behind my top left molar. After a few weeks the sore did not go away so I decided to get it checked out by the dentist. I also noticed a few days before I went to the dentist that there was some swelling in the area too, but I wasn't too concerned and I was sure that it wasn't anything to be concerned about because I am very healthy person.
When I went to the dentist she took a look at the sore and the swollen area but she didn't know what it was. She referred me to an oral surgeon who I went to the same day. The oral surgeon also did not know what it was and was going to have to take a CT scan that would not be covered by my dental insurance, and did not take medical insurance. Not wanting to pay $600 I opted to find an oral surgeon covered by my insurance; however, because it was the holidays I had to wait another week and a half until I would be able to get an appointment.
When I was finally able to go to an oral surgeon that was covered by my medical insurance we were able to take a CT scan of my mouth. At this point I still was not worried. I mean it was just a sore in my mouth and little swelling. How bad could it possibly be?
Once the oral surgeon was able to look at the CT scan he was able to see quite clearly that there was a mass about the size of a walnut growing behind my cheek bone. He told me that it was a cyst that most likely has been growing for the past 10 years -- since I had my wisdom teeth out.
The biopsy was done that day. When I thought of a "biopsy" I thought of the times when the dermatologist had taken a sample of a mole for testing. Quite painless. However, this biopsy was NOTHING like that. It was as if he was taking a crowbar to my mouth. I also was not anticipating the extreme swelling that would occur for almost a week!
When I went back to oral surgeon to receive the news of what kind of cyst I had, the oral surgeon opened up with "I give you the right to be mad at me." I didn't know what this meant; however, he proceeded to tell me that when he did the biopsy he knew right away that it wasn't a cyst (a mass full of liquid), but was a tumor (a mass full of tissue). He did not want me to worry for a week regarding if it was cancerous, because there was a good chance it was.
I am so thankful for his decision not tell me. A week of worrying wouldn't have done me any good -- so even though he gave me "the right to be mad at him," I was nothing but grateful.
I sat there in shock as he was telling me all this. It was not until he told me that I would most likely lose my three back teeth and that they wouldn't be able to replace them that I started crying. At that moment it hit me that this was something that I couldn't "fix" 100%.
I am a healthy person. I only get a cold once a year. It was strange to feel totally healthy while being told I had a tumor.
The oral surgeon proceeded to tell me that I have a rare benign tumor called Ameloblastoma. This type of tumor most commonly appears in the lower jaw, so the fact that mine was/is located in the upper jaw makes things a little more complicated. He referred me to a Head and Neck surgeon, who he trusted, to give me my first opinion of what needed to be done.
I am not the kind of person that lets my emotions take control of my logical thinking. I am a woman of action. If there is a problem, I do not cry about it, but rather look for a solution of how to fix the problem and move forward. However, I left the doctors office in tears. When I called Pat to update him on my condition I couldn't find a private place, as privacy does not exist on the streets NYC. I ended up just sobbing against a building while standing on the sidewalk trying to hide my face from the people passing by. One elderly gentleman came up to me and tried very hard to offer his help. It was very cute and rekindled my faith in New Yorkers.
Once I digested what was happening I was able to think logically once again and I started taking the appropriate steps to get this taken care of.
I met with a few "top of their field" doctors in NYC and quickly discovered that regardless of the surgical process, I was going to need my mom to help me take care of Hunter after the surgery. With the additional worry of caring for Hunter, I decided to fly to California and meet with doctors there, so I could recover at my parents house in the Bay Area.
However, because this type of tumor is so rare and the location of my tumor was even more uncommon, not very many doctors had much first hand experience. I feel this led to all the different opinions I received from each doctor I visited with.
Bone Transplant: Because the tumor had destroyed so much of the bone in my jaw and face, if I ever wanted to have my back teeth again, I would need to take the bone from my tibia and transplant it to my jaw. This would leave me with a scar from my nose to my top lip, a scar on my neck, and scar on my leg. This would be an 8 week recovery.
Skin transplant: When my back teeth and tumor were removed this would leave a big hole that would not heal on it's own. In order for the hole to be closed they would need to take some skin from the arm and put it in my mouth. I would have a very large scar on my arm and smaller scare on my neck. I would still never be able to have back teeth and the recovery would be 6 weeks.
Palet Rotation: When my back teeth and tumor were removed this would leave a big hole that would not heal on it's own. In order for the hole to be closed they would take the roof of my mouth and rotate it 90 degrees. This could lead to a change in my voice and a slight speech impediment. This would allow the hole to be covered without any scars on my body. Recovery time would be 6 weeks.
Obturator: When my back teeth and tumor were removed this would leave a big hole that would not heal on it's own. In order to avoid a long recovery and any scars a obturator could be used to "plug" up the hole in the mouth. An obturator is a temporary denture that would need to be cleaned out every night. When the obturator is not in the mouth I wouldn't be able to speak since the hole in my mouth would lead directly to my sinus. This would mean I wouldn't be able to have a conversation after I went to bed for the night. However, it would be a simple surgery with the recovery time only being two weeks.
After two months and seeing five different doctors with five different opinions, I finally decided upon a surgical process from a doctor at Standford Medical Center in California--he had the "Just Sew It Up" Opinion. Even though all the other doctors said that the hole that would remain, after removing my teeth and the tumor, would not be able to closed by just using the local tissue around the hole, Dr. Kaplan, was of the opinion that there was a 70% chance it could be done. That meant that he would remove my teeth and tumor and then just sew up the hole. If this worked I would just be missing some back teeth. If it didn't work, then I would have to get an obturator, but even if that did happen the obturator wouldn't have to be as big since the hole would be smaller. The recovery time of this operation was two to four weeks.
I was so excited to have found this doctor, since all the other doctors said what he wanted to do was impossible and wouldn't work. Everything was falling into place so nicely. I was able to set up a surgical date for March 1st -- three months after my first biopsy.
I had Pat fly in from New York a few days before the surgery because I knew I would need him there for emotional support. I am so glad I had that foresight because I was so scared before my surgery.
As luck would have it the night before my surgery I ended up getting food poisoning. However, luckily I stopped throwing up by morning and the doctor said he would still operate.
My surgery was at 3pm and would last for 2 to 4 hours. As the time neared I became more and more nervous. I was dreading the feeling when I would wake up from the anesthesia and be missing my two back teeth. I was dreading the pain that I might feel. And as the time came closer and closer I started fearing the surgery itself. All the "Grey's Anatomy" shows I had seen started flooding my mind. Finally, when the anesthesiologist came to wheel me away panic set in. I kissed Patrick goodbye and cried to myself as they wheeled me away.
As the anesthesiologist started doping me up the nurse tried to get my mind off of things by talking about a vacation she was just on. As I was drifting in and out of consciousness I started panicing that they wouldn't give me enough anesthesia and that I would be able to feel the surgery but not be able to tell them. As this thought came into my mind I could hear the anesthesiologist and nurse talking about how fast my heart rate was and how scared I must be. This made me even panic even more because they must not have known I could still hear them! I mustard all my energy to slur out the words "I'm still awake."I must have done a good enough job to alert them because their response to my cry was "it wont be much longer."And they were right--within in a few seconds I was out--Thank God.
|My dad resting up during my surgery--this is so my dad.|
When I woke up I was in a lot of pain and extremely uncomfortable from the feeding tubes. Once I was able to get stronger medication and was sufficiently doped up, I was much happier.
|Trying to manage the pain prior to getting enough pain meds|
For the next week I was in bed sleeping most of the day, while my saint of a mother took care of Hunter, both day and night. I don't know what I would have done if it weren't for my mom. She made the whole process so much easier since I knew that my son was being taken care of by the best mom ever.
I was surprised by how little I swelled. Considering how swollen I got with the biospy I figured half my face would be the size of a basketball since they were drilling away a tumor made out of bone which was the size of a walnut in my skull! All things considered, I thought I was looking pretty darn good!
Here is the miracle doctor giving me a check up a week later. He wanted me to open my mouth so he could take a look, which was quite painful. I couldn't open my mouth more than a half inch or so for about a month after the surgery because during the surgery I think they had to dislocate me jaw and what not in order to get inside.
Throughout the course of discovering, researching, and removing the tumor I was scared, but mostly extremely grateful for all the blessings that came along with this health scare. It might seem morbid but something that really kept me "looking on the bright side of things" is that I realized that things could always get worse. At first I thought I had a cyst, which I thought was horrible. Then when I found out it was a tumor I realized how grateful I should have been for it only being a cyst. This little experience made me realize that things could always get worse, so I should always be grateful for how things currently are.
-It wasn't cancer. No matter how bad the end result of me having to remove this tumor would be, nothing would be as bad as it being cancerous.
-I found the tumor before it damaged any of my nerves. I was extremely lucky to have found the tumor when I did and that I went to the doctor because of a little sore (my advice to everyone is to always err on the side of caution and GO TO THE DOCTOR). Usually in these types of cases the person with the tumor doesn't find out about the tumor until it is too late and it has destroyed nerves, meaning the loss of feeling or the loss of eye sight. Also, the outcome of my surgery was so minimal (only two missing teeth), and it would have been much worse if the tumor had continue to grow.
-I found the tumor while I was still employed with amazing health insurance. When I found the tumor it was the last month of my maternity leave. My work was absolutely amazing in being super flexible and granting me additional disability leave. With all the doctors visits, CT scans, tests, hospital stays, and surgery I only had to pay $400 out of pocket.
-By living in NYC and attending a church with many influential people I was able to use their contacts to find the top Head and Neck surgeons in the country. I actually found my miracle doctor through a referral from a doctor that I met with in NYC, who I was able to meet with because he knew the man I went to church with.
-I was able to consult family friends in the field of dentistry to help me get all my info. They were able to help me in the decision process and help me understand what the doctors were telling me.
-Pat's works was really flexible and allowed him to work from a distance so he would be with me and Hunter during my surgery and recovery.
-My family was a huge support to me during this time of need. I knew whatever I needed they would be there to do all they could to help me and my family. When I thought that I had to get a skin transplant to put on the roof of my mouth my mom offered to give me the roof of her mouth so I didn't have to have a scare on my arm. Now, if she isn't the best mom in the world, I don't know who is!
-Being a member of The Church of Jesus Christ of Latter-day Saints, is a blessing on daily basis; however, I have seen how being a member during times of crisis is the greatest blessing of all. I have seen how the church and its members have gone into "action" helping me in every way possible.
-I am extremely blessed to have a knowledge of a loving Heavenly Father. During this time I have felt Him by my side holding me hand throughout the entire process and leading me to the right people.